Thursday, 29 January 2015

REMEMBERING MY DAD

It’s a year ago today that my father died.
Peacefully, in some discomfort but not in pain, in his armchair. I had been to
visit him earlier the same day.My mum died four years ago, in much
discomfort I am sorry to say.I saw this on the web today and thought it
was so great that I would put it up here. Sorry it is written anonymously
otherwise I would provide attribution.

‘Cardiac arrest, public toilets’,
proclaimed the tinny speaker in the intensive care pager. Clutching the grab
bag and defibrillator I headed toward the scene, considering what we were
likely to find. There’s an unwritten rule of cardiac arrest: if it’s in a
public place, it’s always a syncopal episode, a faint.A number of responders had
arrived before me at the cramped and panicked toilet area and started the
well-trodden resuscitation path, delivering CPR to an elderly man we’ll call
John. John had not fainted. Evidence of rigor mortis, the stiffening that sets
in when the muscles stop receiving oxygen, was already manifest, and his face
showed the calm, waxen permanence of death we hospital doctors become so
familiar with.The defibrillator, a machine that
allows for rapid assessment of the heart, confirmed the complete absence of
electrical activity. A search through his personal effects while chest
compressions were ongoing revealed an elegantly handwritten note, written
without fear or prejudice, with admirable perspicacity and with a strong
undertone of defiance.A life in the shadow of the sword
of Damocles is one humans are not designed to endure.

Deciding to end life.

It began: “Dear the doctors and
nurses of [our hospital],” and went on neatly to summarise a predicament
affecting so many in our society. John had recently been diagnosed with myeloma,
a cancer of elements of the blood, which is treated with potentially
debilitating chemotherapy. In addition, he described an unstable thoracic
aortic aneurysm (a dangerous dilatation of the great vessel leaving the heart,
which can rupture catastrophically at any moment), which would be too risky to
operate on. The decision not to operate, consistent with the Hippocratic
imperative (first do no harm), would almost certainly grant him a longer life.
A life, however, in the shadow of the sword of Damocles is one humans are not
designed to endure – a frequently unappreciated blight of modern diagnostics.John’s cool, phlegmatic
assessment of these treatment options was that they were overly aggressive, and
given the terminal nature of his predicament, he had pragmatically opted to
“hasten his demise”. With no better options at his disposal, he had chosen the
familiar environs of his local hospital and locked himself in the downstairs
toilet. In the small hours, alone, but resolute, he allowed his life to ebb
away. One can only imagine the cloying terror as his vision of the world
narrowed and faded, his fear of being discovered with an involuntary noise, and
the superhuman force of will that must have been required to quash his primal
imperative to survive. His choice of the hospital reflected his gentlemanly
consideration for others: he wanted to limit distress to those who would be
most able to deal with it. Well dressed, with his elegantly written note, he
had brought as much dignity as possible to this most undignified of deaths.

Dignity in death

Public discourse about
end-of-life care remains limited, despite the attempts of (predominantly)
terminally ill individuals to secure for themselves the same dignity and
autonomy in death that we vociferously support in life.We are dogmatically trained to
assume that the desire to shorten one’s life must be associated with mental
illnessJohn’s family recognise the
fierce independence that led him to act as he did. For many others who make the
same decision, more maleficent forces can come in to play.The first is the widening chasm
between older people and their friends and family. The generation now entering
retirement tends to value the concept of absolute independence. The recent
divorce between the old and the young, a phenomenon for which both parties must
take responsibility, neutralises some of the greatest gains since humanity
formed complex social groups 50,000 years ago.Multigenerational communities
foster inter-generational learning, a more efficient transfer of time and
wealth, a stronger recognition of life experience as wisdom, and an increased
engagement with disparate elements of the wider community. Perhaps the sense of
isolation felt by many of our older people would be felt less keenly with more
integrated social structures.The second is the wider debate on
assisted suicide. The topic has become so polarised that many feel unable to
explore their feelings with anyone, particularly a medical professional. We are
dogmatically trained to assume that the desire to shorten one’s life must be
associated with mental illness.

Healthcare professionals must listen to
patients’ dying wishes.

That we almost universally
consider it to be inhumane to allow an animal to suffer an injury or illness
from which they will not recover, while patronising intelligent, sensitive, and
above all, autonomous individuals who hope for the same right, is a disgrace.
Of course there must be rigorous safeguards and, rather uncomfortably, of
course there will be errors and transgressions, but that does not mean the
morally courageous option is to dismiss the debate on the myopic and selfish
assumption that it is unlikely to affect us.Frequently, those most invested
in pursuing this route are the least physically able to evangelise widely, and
when the debate becomes so personally relevant, any argument risks being
dismissed as too emotionally biased for rational debate. It is crucial to state
that, as with other morally challenging areas such as abortion, there will and
must remain those staunchly and actively opposed. Thus the decision can exist
in tension, forever under scrutiny, preventing the casual moral inflation that
terrifies the ethically observant.

Why is so little weight placed on suffering?

Our modern culture oddly places
little weight on suffering (which is unquantifiable; perhaps fortunately, one
can never experience someone else’s pain), and overweighs death (irrationally,
since this is life’s one guarantee). This is no more amply demonstrated by the
fact that hospices – which focus on mitigating suffering – tend to be
charitably supported, whereas as a nation we use 30% of our lifetime health
expenditure in our last year of life, receiving intensive and traumatic
hospital-based treatment.As a physician, I recognise that
the increasing target orientation of the medical profession encourages the
sometimes inappropriate prolongation of death, while selling it as a noble
extension of life. This is powerfully reinforced by the spectre of hope,
emboldened by a sensationalist media bias to report the miracle cures and
ignore the failures.True understanding of the
consequences of treatment requires a medical degree and a lifetime of exposure
to the distress intensive medical treatment causes patients and their
relatives. An undercurrent of public distrust of physicians’ motives, sullied
by misinformation about the Liverpool Care Pathway and recent hospital
scandals, makes the difficult conversation about withdrawal or limitation of
treatment seem at best callous and patriarchal, at worst sinister.Doctors, when it comes to their
own end, tend to opt for the least complex healthcare intervention, which
should serve as a comforting indicator that their motives are benevolent. Most
choose only effective analgesia and a peaceful death at home with their loved
ones.However, the more advanced our
tools, the harder it becomes to justify not using them, and the pernicious term
‘ageism’ has been the Trojan horse under which much of the recent increase in
medical intervention has been smuggled. Whether driven by fear – of death or
litigation – ignorance, hope, or the imperative to ‘win’ against disease at all
costs, we sit as King Canute: foolishly, distressingly and impotently
commanding the inexorable tide to retreat.Those who fail to come to the
moral negotiating table over indignity in death condemn the silent many to the
lonely path John took that night: scared and alone, yet principled,
considerate, and fiercely autonomous to the last.